Cardiomyopathy Newbie

Hello,

I just got diagnosed on Dec 21st with Cardiomyopathy (unspecified, as of now). After months of increasing chest pains and shortness of breath, I had an angiogram showing no arterial blockage. I do have Left Bundle Branch Block showing on the EKG and an EF of 35%. My cardiologist then kicked me up the line to a heart failure cardiology specialst, whom I see in January. In the meantime, even sitting at my desk at work is a cause for pain, and that's on a day with normal workflow and no stress. Walking in a store caues the pain as well; just getting groceries. Like other posts, it's become living daily with the pain, until the docs decide on a treatment. At the moment, it is meds, Beta Blocker, Torvastatin, low-dose aspirin. Pacemaker is another option; guess I will find out in January if there will be something like that. I'd love to be able to go back to my elliptical or even walking again. Started out pretty healthy, no previous major issues. Thanks for listening!

Hey Newbie, hang in there! Your story is very similar to mine. I was diagnosed in May with Left Bundle Branch Block and viral (for lack of other cause) non-ischemic cardiomyopathy. I was fortunate to have virtually no symptoms but EF was 20% then after meds and exercise went down to 10%. I too was escalated to advanced heart failure clinic folllowed by several more weeks of aggressive meds. To cut to the chase, my EF was then at 27% so I now have a defibrillator with pacemaker function for three weeks today. It was really a pretty simple out patient procedure and I do feel good. The pacemaker is hopefully going to help my heart repair. Just wanted to share some hope for what was constantly on my mind for 6 months. I had my first device checkup last week and the clinic said they manage 8000 devices in West Michigan. Guess we are not alone! Good luck to you.

BigMetz,
December 27, 2018 12:16pm EST

Hello there Newbie,I'm about 5 months into my diagnosis and will tell you that this forum will mentally strengthen you.I so vividly remember my disappointment on an excellent angiogram.We always strive for a definitive answer.As "Beathisthing" alluded to with "for lack of other cause" it truly gnawls at you not to be able to assign a reason.I second guess myself for not taking my Dr's advice 10 years ago about going on blood pressure medication.Seeing the similar and very different experiences push me forward and I try not to dwell on what if's.I function normally with just a moderate increase in EF (so far). There seems to be a myriad of effective drug combinations used to treat this condition and I'm sure your specialist will find the one that's right for you! Happy healing and enjoy the Holiday season with your loved ones!

Sparky1958,
January 3, 2019 9:12pm EST

Hello, I spent my christmas in a hospital in Florida with CHF. My first time to Florida. I have been telling my cardiologist about my symptoms for over 6 months. I felt like he was blowing me off. When I got back to VA. I went to new Dr. He informed me that I had Chroinc systomic heart failure, There is no cure since it is genetic. I was blown away. We are trying to get my heart stronger by using meds before installing an ICD or pacemaker. I hope i get a little stronger so i can go out walking again. Sorry you are having so many difficulties. I do know how you feel. Take care of yourself

Sparky

marshamd59,
January 4, 2019 11:19am EST

Sparky1958, sorry to hear you spent Christmas in the hospital in Florida. Not quite the vacation you had planned, darn it. It is so frustrating when you have a doctor that won't listen to you. I've been there! I'm glad you found a new one and I hope the communication will be much better. It is so important when you have heart failure to have a team that listens to you and does everything they can to get you back to the best you can be. I would suggest once you feeling stronger to ask your Doctor about Cardiac Rehab. It helps you gain confidence to start exercising again while they monitor you to make sure everything is okay with your heart.

KarenMaru, I hope your January appointment is soon. Please let us know what you find out. I hope they can get you on the right meds so you can start feeling better. Please know there is hope of living a long time with this disease. I was diagnosted with left ventricle cardiomyopathy in 2005 and CHF in 2014. With some surgerys to repair a leaking valve and AFIB both caused by the cardiomyopathy and with placement of a pacemaker/defribillator I am doing well and able to function daily and have a good quality of life. While I can't exert myself as I could before all this, life is good and I'm grateful each day for the many things I can still do. These days there is much hope for those of us with CHF.

Take care and all the best my friends!

Michelle

AmbassadorB,
January 4, 2019 5:14pm EST

Hi KarenMaru,

With all of the latest devices, major advances in surgical procedures, and post op. miracles, why is it that we become nervous, sometimes fail to ask important questions, and wonder if the surgeon got up on the right side of the bed? The answer, of course, is that we know we're at the mercy of the surgical and hospital team. We know that they are the finest and that we are lucky to be in their care, still a little insurance is nice to have. The story that I offer to you, is: "An older gentleman was on the operating table awaiting surgery and he insisted that his son, a renowned surgeon, perform the operation. As he was about to get the anesthesia, he asked to speak to his son. "Yes, Dad, what is it?" Don't be nervous, son; do your best, and just remember, if it doesn't go well, if something happens to me, your mother is going to come and live with you and your wife . . . . ."

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